this is nothing but a curve ball

I was thinking of a good introduction for this post. I realized a “hello!” would sound quite inappropriate considering I’m not in the most socializing mood at the moment and a “hello” definitely feels like a conversation starter.

I’m not usually in a mood like this but today hasn’t been the best. Please don’t think this is my norm, because I’m usually a pretty friendly person. It’s just that this just happens to be “not” the best of days for me.

Overall, I’ve been feeling more and more tired lately. I pretty much spend a majority of my days in bed, either sleeping or resting or if I’m lucky, I get enough energy to get some “productive” activity like writing or making something creative.

I saw my rheumatologist the other day and asked if there is anything that can be done. She mentioned a particular vitamin that “may” give me a boost, but, considering my “scleroderma, fibromyalgia and everything else going on” in me, it “might not” make much difference. *sigh*

We also spoke about the frequency, dosage and current positive effects of my current mess. I take so much medication that it’s so hard to know which ones work and which ones don’t.

It turns out that some meds barely work better if you take a slightly higher dosage so it might be to my favor to take less, just to lessen side effects.

Upon reading the side effects of my medications, there are quite an extensive list of side effects that I experience.

I apologize for not being able to update as often. I normally let my husband update our family and friends through facebook. There’s so much going on and I’m surprised I was able to write this post, hopefully I can finish it.

Let’s start off with my breathing. My breathing is much more difficult now even from the last post I did about a month ago. I am almost always on oxygen 24/7 even in the shower. I would only remove my canulla when I’m eating.

The consistent oxygen flow is making me less dizzy when I move around. I also don’t cough as much when I talk or walk my short distances.

My cough is still here. My cough attacks get so bad that start blacking out while having them. I’m still taking my asthma medication (Dulera) and Albuterol when I need it. I’m also taking my Allergy medications which are Flonase, Zyrtec and Singulair. For my cough I take Benzonatate and Cheratussin (if my cough is really bad at night and I can’t sleep). I also take Prednisone and it lessens the cough as it’s supposed to lessen the swelling of my lungs.

For my GI tract, I currently take Domperidone for my slow gut motility and I was just prescribed Xifaxan to treat the bacteria overgrowth in my intestine.

My Fibromyalgia is being treated by a drug called Effexor, which is the most helpful one I’ve tried so far. Does it completely take the Fibro pain away, no, but for me, it is better than others.

For my Scleroderma I’m taking Cellcept for my maintenance. I will also be receiving Rituxan infusion every six months.

My Pulmonologist listened to my lungs and suspected Pulmonary Hypertension. I did an ECHO and Right Heart Catheterization. I might have to take another Right Heart Catheterization “with Exertion.” I’m still waiting to speak to my doctor regarding that.

I’m constantly tired, and dizzy and lately, have terrible migraines and chest pains.

I often just lay down and rest. I try to nap often to get rid of my migraines. Naps help, sometimes. But it comes back again after an hour or so.

Stress literally triggers my fibromyalgia pain. I have to deal with my disability paperwork and my doctors office constantly and it brings a lot of stress thinking about it and worrying about it. After a letter or a phone call from disability, I will for sure have a bad pain attack later that day or that evening.

All I can do is pray and take some pain relievers. many times they don’t work. I try to just take the pain in because… I don’t have any other choice.

What I do choose to do is to be a little more crafty and send letters to pen pals. It’s something I can do sitting down and I can stop and start it whenever I feel like it. It helps me to be distracted and creative too.

I’m also meeting other people in social media who are chronically ill. It’s nice to know that there are other people out there who have similar experiences as me and I’m not alone =)

I don’t know what other people do when they are out on disability. But I can tell you what I’ve been doing. Many days I’m in bed almost all day long because I don’t feel well. When I finally get up, the day is almost over. I then squeeze in some distractions to keep me pain free. Even when I don’t feel good, I still have to wake up early to tend to the kids till it’s time for them to go to school. We have so many doctor’s appointments, tests, treatments, paperwork and prescription drop offs and pick ups and I’m so glad my hubby helps me with these tasks.

Sometimes, on my bad days, I just cry. I get so frustrated with my condition and I worry about my husband and my kids. I want them to have a happy, memorable and full life. And this curve ball we’re dealing with is making it more challenging for us to do so.

I pray for my healing and those around me that need healing as well, but I’m learning to take in my symptoms well and my family has been so gracious to do everything to make life at home as stress free as possible for me. Thank you everyone for your constant love whether by messages, text or call or visits. I am blessed and thank God for each one of you.

What I do ask is for your help in encouraging and praying for my husband and kids. They have been so supportive and loving all these years caring for me. I don’t want them to feel so stressed about my condition.

I can’t always be around them to ask them how they’re feeling or to make sure they feel loved and cared for. I don’t know how many people have approached them and actually offered to spend time with them just so they can vent if they want or just to talk about how they’re doing with my situation. Sometimes, there’s a difference with saying, “Let me know if you need anything” and with “Can we meet up on friday night?”

Also, please be patient and understanding with us. We are not perfect. But with all our imperfections, we are not arrogant and judgmental people. We are indebted to the kindness of everyone that we’ve met and known all these years and this is what we are trying to teach our kids as well. What we choose to share about our family are the times that we hold dear to our heart and important to us.

If we’ve ever said or done anything in the past to offend any one of you. I’m deeply sorry for any pain and suffering you may have felt. We do not mean to offend any of you. We apologize and hope you can forgive us. We’ve done a lot of dumb and irresponsible things when we were younger, but we can no longer be irresponsible.

We are trying our hardest to at least live a normal life. My husband works almost all the time and is always tired coming home to a sick wife he has to care for. He has to do almost all the housework by himself. We keep our kids busy so they can have an amazing experience growing up. I try to get up everyday and at least try to accomplish one goal for that day, no matter how small. We are daily surviving only by the Grace of God.

So please be patient and understanding with us. We have so much going on with us in our lives right now. Even if you can’t physically help us in any way, continue to pray for us and at least bless us with your words and your thoughts.

It’s a lot less stressful to know that people think of us and bless us with their words instead of think of us and all the stuff we did wrong. We would appreciate your kindness in this time, thank you so much.

Proverbs 16:24
“Pleasant words are a honeycomb, Sweet to the soul and healing to the bones.”

Wow! I can’t believe its been so long since I’ve written an entry here.

Let me tell you what’s been going on.

I continued my cytoxan treatment till March of this year. I am now on cellcept which is now my immuno suppressant in pill form which I have to take 1500 mg 2x a day in addition to my other 8 medications i take 2x a day.

My cough is still terrible. I cough so much that I either not getting any sleep or I’m just completely tired from exerting so much energy coughing. I’m currently on prednisone daily, because it does help a bit. And you know that prednisone does cause weight gain….boo!

I am also using my oxygen more often. I get tired after short walks and get short of breath even after getting up.

My hair is falling off and my face is breaking out with acne. I asked the doctors which medication it is causing it, but they said any of them could. I’m still dealing with both issues daily but I decided to cut my hair short for the meantime to lessen the stress when I see my hair come out. And I’m also taking topical solutions to help take care of my skin.

Here’s the silver lining….

Having to deal with pimples make me feel like a teenager again, woohoo!

After my 6th chemo, my rheumatologist said my skin has gotten so much softer, yay! He even brought in an intern to feel my skin and told her that unlike the other patients, my skin isn’t as thick and puffy as theirs.

Just for precautionary measures, i was prescribed another 2 rounds of rituxan.

I also had been having a hard time sleeping due to coughing, and my fibromyalgia has been acting up really bad. My doctor mentioned I may have bronchitis and that causes the coughing which causes my lack of sleep which triggers my fibromyalgia.

He wanted to deal with my bronchitis with some medications and hopefully stop the whole cycle. Ten days with antibiotics and steroids cleared me up, whew!

I was doing great until recently that I’ve been getting so tired lately just by exerting a little bit of energy and I’ve also been coughing and aching everywhere.

I hope I didn’t catch anything because I’m so prone to everything since I’m on chemo.

So about doctors and specialists…in addition to my 2 rheumatologists and 1 pulmonologist, I also started seeing a pain management doctor 2 weeks ago and I will be seeing a physical therapist on Friday. I’m so exhausted with all my appointments and it feels like they just keep adding on on top of each other.

Anyway, I talked to the pain management doctor about what I go through daily with work, home and life and she agrees it may be causing stress that is causing my pain. Unfortunately, there is really nothing she was able to help me with. She says I’m coping pretty well. But they want to try everything, which explains the PT appt coming up, so we’ll see, Dunn Dunn Dunn….

It’s hard for me to admit that I’ve been having a hard time more everyday with the pain in my hands and joints and the fatigue but I’m so happy that I get to overcome them daily.

God’s good and I thank Him for his favor in our lives no matter our circumstance. I’ve been trying to teach the kids more about my condition regularly and explain to them how them helping me out is such a blessing. I love that they understand the importance of being grateful for everything and being a blessing to others.

In other news, I was invited to show some of my work at an exhibit a couple of weeks ago. It was such an awesome experience. I was very blessed!

Sorry I haven’t posted for a while. It’s been super busy. Our dear boy turned 9 and we’ve been spending a lot of time with family and friends. I’ve also been feeling terrible on and off. Today, I’m feeling good considering I woke up early for today’s treatment and I’m starting to feel super tired.

So let me catch you guys up with our little crazy last few weeks…

First of all, thank you, thank you, thank you for all the love, support, prayers and encouragement that I’ve received since the CBS segment went on.CBS June 22,2014

I am humbled and blessed by each one of you. Thank you for taking the time to reach out to me, to reconnect , make friends, and share your stories, encourage me and ask questions. I am happy to be a part of spreading the awareness for scleroderma 🙂

We’ve participated in 2 walks last June. It’s always a new experience each time. Thank you to our friends and loved ones that came out to support.

The hubby and I were also privileged to attend a golf tournament that was a fundraiser for the Scleroderma foundation. We donated some of my prints for the silent auction.

I’ve also met more people with scleroderma lately and I feel great knowing that people understand what I’m going through. I haven’t attended a support group yet but I think I’ve built enough courage to attend one soon, yay!

Now let’s give you an update about my health. My lung capacity is down to 32%. I was coughing so hard a few times that I was blacking out a few seconds each time. My rheumatologist got worried and talked to my pulmonary doctor about possibly getting into the lung transplant waiting list.

They want me to drop to 30% BMI by my next appointment on August 27. As of now I need 13 more pounds to go, eeeek!

I’m still coughing but I’m learning to pace myself. I try not to exhaust too much energy. I always have my oxygen around me and I use it more often now when I’m starting to lose breath.

I’ve been keeping myself busy. I still go to work, enjoying the company of people who support me and see me everyday as just Kristine 🙂

At work, I’ve been very active in improving team spirit and building strong team relationships within my group with the help of my manager and mentors.

With the trust of my higher management, they have allowed for me to come up with creative solutions to everyday challenges. I love my job!

And you wouldn’t believe what I do for my job if you asked, lol

Outside of work, I’ve been trying to explore my artistic side a lot more, along side with my two amazing children. Thank you hubby for being our enabler 🙂

Ok now for not so fun details about me…
The skin on my face is starting to lose pigmentation. Hypo pigmentation due to the hardening of the skin with my diffuse scleroderma.

My skin on my hands and feet are so dry and I notice them darker than the rest of my body.

I get tired easily still, so I’m normally sitting down a lot. And when I’m home, always lying down.

I still have fibromyalgia that is very annoying especially at night. It hurts on the side of my knees the most making it difficult to sleep. My fibromyalgia has been aggravated by being upset. It’s amazing how sometimes when people can’t understand you, the only way to deal with it is by trying to understand them.

Having scleroderma has thought me a lot about living everyday making the most of it, loving people you care about as much as you can, appreciating every thing no matter how small they are, staying strong not for anyone else but myself first, and keeping my faith in God stronger everyday.

I thank God for constantly giving me ideas on things I can do. I’m grateful that I feel even braver to take on new things than I did before.

After the news story aired I’ve been asked where I got my oxygen glasses. They are from a company called Oxy-View, based in Engelwood, Colorado. We had to order them online since they were not available at our optometrist. My husband actually surprised me with them on Valentines day, sneaking behind my back and talking to my optometrist to get the measurements of my lenses and consult with Theresa from Oxy-View to get the right ones. He made sure they had Transition lenses so they turn into sunglasses as well. And I have to thank all of you who bought my artwork because the money raised from the sales paid for the frames and lenses. They have been a life changer. I can use them at work and no one even notices I’m on oxygen. I don’t have a cannula (oxygen tube) covering my face when I have conversations with people. It is definitely worth the investment. Unfortunately it’s not covered by insurance yet but hopefully it would be for others that need it. Please check out their website: http://www.oxyview.com and consult your physician, optometrist, and the wonderful people at oxy-view to get the right one for you.

Remember about me feeling terrible from my May 3rd post? Well, guess what happened?
At 4am on May 5th, I woke up with chills. I texted hubby to come home (he was working a graveyard shift that night). I checked my temp and it was 106 degrees. He rushed home to take me to the ER. It was one crazy morning!
I ended up having an infection. They gave me 2 bags of hydration and an iv of antibiotics. I was sent home later that day. The antibiotics that was prescribed to me also worked really well. I felt a lot better by that evening-whew!
Cytoxan #3 went fine. I felt a great deal of pain as my iv was getting set up. I toughed it out and lasted my 6 hours.
So far not much nausea and no significant hair loss yet. I have however noticed my taste buds acting funny. I can no longer taste soda. At least that’s a good way to end my diet coke addiction.
I’m still coughing a lot which has been taking so much out of me. I manage my cough by not exerting too much or walking or working too hard, but sometimes these lungs of mine are just too sensitive, lol.
Also, getting ready in the morning is so exhausting. It’s becoming a challenge to dry and brush my hair because my arms get tired easily.
And about my friend fibromyalgia.. My fibromyalgia has been on overdrive in the last few days, especially at night. I normally have a very high tolerance for pain but even I couldn’t ignore this particular one. I would end up crying till I fall asleep because nothing helps with the pain.
But I’m ok. It’s just pain, I can deal with it. I’m still smiling, still being productive and happy.
We went to UCLA last Tuesday. My doctor said that my skin score went down meaning my skin got softer. He’s hoping the same for my lungs.
I wonder how my results always show the opposite if how I feel, cause I should be better but I’m coughing so much. Well, I have a pulmonary function test next week and I’ll find out when my current diffusion rate is.
I told my doctor about my crazy hot flashes and brain fog. The brain fog is so bad that I forgot how to do certain parts of my job and I’m constantly forgetting the words I wanted to say. He thinks I’m over medicated and decided to lower my next dose if chemo, fun! Lol
May was super busy with work and getting sick and all, but being busy has been a good distraction from feeling bad.
By the way, the walk is next week… Come walk with us at La Mirada Park on June 8 if you’re not busy, I’d love to see you.

Even though most of my symptoms from the chemo was pretty much nausea in the first few days, I started feeling a lot of fatigue. Not that waking up in the middle of the night 3-4 times from coughing was helping either.
So during the last week, I’m always tired, coughing and having a hard time to breathe. My body has been hurting so much with my arms and legs being swollen. The pain was getting so unbearable that I start crying at night because no pain medication was helping. Every part of my body that gets touched or pressed on hurts so bad. It’s so exhausting and painful to be me.
During the last week, my nose has been bleeding at least once a day. I understand, the Weather is hot, but sometimes my nose bleeds even when I’m cold. Last night, my nose bled for about an hour. Hubby was so worried that he wanted to take me to the emergency room. Me on the other hand is so used to getting nosebleeds that I just waited until it finally stopped. It was no fun.
With everything I’ve been going through, my fibromyalgia is acting up. My legs, arms and back get so stiff and painful several times a day. I’m trying to make sure to be on top of my meds. But nothing seems to work.
During the last few days, my bladder’s been acting funny. I always feel like I need to use the restroom, but nothing comes out and it’s very painful. I looked up what it could be and I found out it’s IC interstitial cystitis. It’s very common with scleroderma. It’s when your bladder gets swollen and it sort of makes your bladder smaller making you want to use the restroom more often. I also read that IC can be triggered by fibromyalgia which would make sense because my fibro has been sooo terrible.
I’m trying to get my fibro under control by thinking about pleasant things and doing things that make me happy.
This morning when I woke up, I didn’t feel so stiff and my Bladder didn’t hurt until I went to the bathroom. I missed two events today because I was feeling tired, my bladder felt swollen again and my back hurts so much. I stayed home and tried to rest up, but I woke up with a fever.
This is crazy. So much is happening to me. Never a dull moment with scleroderma , haha ! I’m thankful to my hubby, kids, family and friends for always being so supportive and understanding.
Praying for a better day tomorrow. 🙂